Quality of life of ALS and LIS patients with and without invasive mechanical ventilation

Abstract

There are very few studies where quality of life (QOL) is assessed in patients with complete physical and functional disability and dependence to invasive mechanical ventilation (IV). We compared QOL of amyotrophic lateral sclerosis (ALS) and locked-in-syndrome (LIS) patients with invasive mechanical ventilation to ALS and LIS patients without mechanical invasive ventilation. Thirty-four patients, 27 with ALS and seven with LIS (vascular or tumoral aetiology) were included in the study. Twelve had invasive ventilation, 22 had non-invasive ventilation, and in the non-invasive ventilation group, five of them had ventilation via mask. The following scales were used for patients: ALS Functional Rating Scale (ALSFRS), McGILL, Short-Form 36 (SF36), Beck Depression Inventory-II, the Toronto Alexithymia Scale and the anxiety inventory of Spielberger. Mean ALSFRS scores were significantly lower in the invasive ventilation group (IV) than in the non-invasive ventilation group. McGILL and SF36 were not significantly different between the IV group and the non-invasive ventilation group; there were no significant differences between the two groups for others scales either. Comparison between IV group and LIS without invasive mechanical ventilation revealed no significant difference for SF36 and McGILL QOL scores. QOL was not significantly different between the IV and not invasively ventilated patients, but ALSFRS was significantly lower in the IV group, and comparison of QOL scores between non-ventilated LIS patients who had the same score of dependence that invasively ventilated patients did not show any difference. Invasive mechanical ventilation for patients who accept tracheotomy allows life prolongation and their QOL is not affected; medical teams should be aware of that.

From unresponsive wakefulness to minimally conscious PLUS and functional locked-in syndromes: recent advances in our understanding of disorders of consciousness

“…The longer patients were in a locked-in state, the higher subjective well-being seemed to be. Another recent study showed that invasive mechanical ventilation for locked-in patients who accept tracheotomy allowed life prolongation without affecting quality of life [72]. Medical teams should be aware of that.…”

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

“…Though recent guidelines support the physical benefits of NIV for NMD (Hull et al, 2012), studies suggest that NIV may have both positive (Rousseau, Pietra, Blaya, & Catala, 2011) and negative impacts on psychosocial wellbeing and quality of life (QoL) (Katz et al, 2010;Mah, Thannhauser, McNeil, & Dewey, 2008) Similar to youth with other chronic conditions (Björquist, Nordmark, & Hallström, 2015;Sonneveld et al, 2013) , participants expected to become more autonomous in their health management. In relation to being able plan for the future, participants appreciated the efforts of specialist NMD doctors' to identify their individual diagnosis and the focus this gave.…”

Comparison of steady-state visual and somatosensory evoked potentials for brain-computer interface control

“…LIS also places a large physical and psychological burden on family members due to the near total absence of the ability to communicate with the individual [1]. In some instances, vertical gaze or eyelid movement is preserved [1], [2], [4], allowing for blink-based or gaze-based communications. However, there are many cases in which individuals do not retain this function [1].…”

“…Insult to the ventral pons such as trauma, hemorrhage, or an infarction as well as progression of Amyotrophic Lateral Sclerosis (ALS) can lead to this condition [4]. LIS also places a large physical and psychological burden on family members due to the near total absence of the ability to communicate with the individual [1].…”